Quick September CF Update

I haven’t been online too much this summer. I have been sick so frequently that some exacerbations began only days after the previous one(s) settled down. It was a rollercoaster of antibiotics, mostly to treat my MRSA.

Now, it appears that the common CF bugs – Pseudomonas Aeriginosa – has taken advantage of pushing down the MRSA, and the 3-4 strains of PA (I culture between 1 and 4 strains at any given time) have found their way to the top of the food chain.

My lungs are in rough shape – coughing at night, weird night moaning that signals dropping oxygen levels, extreme fatigue, coughing up mucus and pus, fever, and the feeling that I am absolutely losing my ability to function on a basic level.

I am likely going into the hospital next week for IV antibiotics.

There are no oral antibiotics that can treat my strains of PA, so my only option is a cocktail of 3 different IV antibiotics to try to cover all of the bugs growing in my lungs right now. As you may know, it’s become increasingly difficult for the Interventional Radiology team to find a good vein to place a PICC line, and a year ago, I ended up with a very uncomfortable tunneled PICC line that threaded through my jugular vein – a process that took 4 agonizing hours while my face was covered with a sheet.

It will take a miracle to find access into my veins…thanks to the number of blood clots (we’re at 3) that have formed around PICC lines), a dozen or more traumatic PICC line placements each lasting hours, repeat 2nd and 3rd failed attempts, and failed medications designed to put me in a twilight sedative state (that does not work on me).

The nightmares have come back and I am asking for prayers for my strength and courage to get through what they may have to do. I feel like I should be “a trooper” since I know what to expect, but sometimes, it makes me more fearful to experience again.

I will update when I make a decision or anything changes (like a miraculous turn of events!!).

Thank you for checking in.
Love,

Toni

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Kids with Cystic Fibrosis: Making Hospital Stays Better Experiences

Hospitalizations. Scary, not fun, and full of strangers doing painful things to you.

Typically, most kids get through childhood having spent only a couple of nights in a hospital. Perhaps they had their tonsils out and stayed overnight for observation, or maybe had the flu and needed fluids and monitoring for a few days. It’s probably something they (and their parents) will remember for many years and even decades later, because it was likely a singly traumatic or painful experience.

If you have a child with Cystic Fibrosis, you might have to bring him or her to the hospital much more frequently – perhaps for a “tune up” – a two-week course of IV antibiotics, several times a year. Even if they’re “lucky” enough to only have to come in “only” once a year, it’s still a long period of time to have to endure all that comes with being a patient.

Wouldn’t it be great if your child could look back on a 2-week stay and remember it through a different lens?

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